Patient-reported outcomes: how important are they in HIV practice?

Just a few years ago, few people had heard of the term ‘patient-reported outcomes’ or ‘PROs.’ Now, changing technologies are driving renewed interest in PROs as a way to bring the patient voice into clinical practice and improve patient outcomes.

“It turns out that what is really bothering the patient and what is really bothering the doctor can be radically different things…. patients are true experts in their disease”

– Dr Janet Woodcock. Director, Centre for Drug Evaluation1

PROs are reflections of how people feel about their own health, quality of life (QoL) and functioning, without interpretation by healthcare professionals.2 The information is collected via manual questionnaires or by electronic software that enables people to self-report on issues like symptoms, response to treatment, undesirable side effects, and effect on function in between visits. The resulting data can be used to show how interventions affect aspects of a person’s day-to-day life, and to inform quality improvement. Advocates for PROs cite three primary reasons for why they should be adopted in clinical practice:3

  • Individuals are the best judges of the impact of their treatment on their pain, function, symptoms and QoL.
  • PROs are a valuable support for patient-centred care.
  • Systematic collection of PRO data informs efforts to improve quality and safety.

‘PROs represent an important resource for clinicians, particularly when choosing the best therapeutic strategies’

Because effective combination antiretroviral therapy (ART) has transformed HIV into a chronic condition,4,5 the burden of disease for people living with HIV (PLHIV) remains high. Moreover, because patients’ experience with treatments is a key component of their QoL and perceived health,6 PROs represent an important resource for clinicians, particularly when choosing the best therapeutic strategies. In addition, there is now evidence that the use of PROs can help to enhance the quality of patient-clinician interactions,7 patient satisfaction with care,8 and the quality of interdisciplinary support.9

But which PRO tool do I use?

Multiple tools are available to assess PROs in the context of HIV care and choosing the most appropriate tool will depend on issues related to content (i.e. what needs to be assessed?), setting (i.e. where?) and the intended purpose of the measures to be assessed (i.e. what will the information be used for?).

Generic QoL scales (e.g. MOS; MOS SF-36 and SF-12) have been used in the context of HIV infection,10 while disease-specific QoL instruments with a more accurate focus on the concerns of PLHIV have also been developed (PROQOL-HIV11 and MOS-HIV12). In addition, PROs have been integrated into routine care to assess a variety of concepts specific to PLHIV (Table 1).

Table 1: HIV-specific PRO measures13

PRO category Example(s) of concepts

measured

Health-related QoL

Health-related QoL

ART and adherence-related views

Regimen fatigue

Factors affecting adherence to ART

Factors affecting readiness for ART

Healthcare-related views and experiences

Quality of care

Quality of clinician–patient communication

Interdisciplinary care

Attitudes toward healthcare providers

Psychological challenges

Impact of HIV on self-concept

Challenges of HIV survivorship

Symptoms

HIV-related symptoms

Psychological resources

Coping, resiliency

Self-management and self-care

Intention to adhere to HIV care

HIV-related stigma

HIV-related stigma and mechanisms

Body and facial appearance

Body change and distress

Impact of facial lipoatrophy

Social support

Perceived social support

Sexual and reproductive health

Self-efficacy for HIV status disclosure, safer sex

Disability

HIV-related disability

Adapted from Engler K, et al. 2016.

Where can I get more

More information on the use of PROs in practice is available from the following resources:

  • Engler and colleagues reviewed the medical literature between 2014 and 2016 to create an inventory of HIV-specific PROs and concepts targeted over time.13

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  • The American Institutes for Research (AIR) has published principles of patient-centred measurement.14

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  • The International Consortium for Health Outcomes Measurement (ICHOM) is involved with standardising ways of measuring and reporting patient outcomes.15

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  • The International Society for Quality of Life (ISOQOL) publishes two international, multidisciplinary journals: Quality of Life Research and the Journal of Patient-Reported Outcomes (JPRO), together with a user’s guide to implementing PRO assessments in clinical practice.16

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